Oscarisms

My young son last night tells me while I'm tucking him into bed "I wish you had never died Mom". I gave him a huge hug and said me too, me too. Within my dark shattered brain I often forget just what those around me went through. I get so focused on me, how the experience affected who I am, that I forget that others went through it too. I may have lost myself but they lost their Mom, wife, daughter, sister, friend. After all they went to bed on July 16, 2012 thinking Mom would be home the next day.  Instead the next day brings a call from the hospital saying I was dead, or dieing or would die. Their world forever changed that day too. Nothing is the same for me.  Who I am, how I think, my abilities, my personality, my actions and reactions.  It is all different. The hospitals and medical field did nothing to prepare my family for the stranger that was coming home.  They saved the body, they saved the life, they saved the beating heart but amidst all that they los

24/7/365 Twenty four hours a Day, seven days every week, and every single day of them 365. I am in pain. Pain from my S-ICD incision site. How to explain it more: Just existing has it hurting me. Laying on my left side is excruciating. Sitting in a hard back chair (concert seats, waiting room seats, kitchen chairs) creates such pressure and pain I could cry. Movements are limited and difficult.  If I bend over the grating feeling against my ribs from unit feels like muscle tearing.  Near the header area it's such a sharp pain I wonder if a scalpel was left in. I can go from tolerable pain, to gasping in tears from an innocent movement. My torso area is numbish. Yet my back area feels like it's on fire. The sharp short stabbing pain is always present.  The hot burning pain is always present. The small electrical buzzes like a tongue on a battery are intermittent. How do I explain the constant sawing action of the leads over my skin.  Back and forth, back an

October 5, 2012 I was implanted with an S-ICD. Actually during that surgery I was implanted with two.  The first one had a failure after my heart spontaneously restarted after having it stopped for S-ICD testing. It was only through luck that there was a second one available for implant.  My surgery had been originally scheduled a week before. A rep from Cameron Health brought the S-ICD up with them.  Then my surgery was cancelled due to infection. The ICD was left. So a week or so later a different Cameron Health rep brought up a second S-ICD. The day of my surgery had the failed one and the one currently residing in my body.  I needed them both. The failure later caused a Dear Doctor letter and a software upgrade.  I still have an untested unit in me. The unit has caused me constant daily pain, impedes movement, interferes with sleep, I hate it with a passion I really haven't felt about anything since my SCAs. On the flip side it provides a measure of security to my family that